Re: New to this board; Decades of topical steroids and CS -- Steroid Warning Network

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Date Posted: 09:01:23 01/06/07 Sat
Author: Ivy (Understanding)
Subject: Re: New to this board; Decades of topical steroids and CS
In reply to: Susan 's message, "New to this board; Decades of topical steroids and CS" on 16:54:56 01/05/07 Fri

Susan,

I am very glad you found this site and were able to speak with Leslie! She has helped me tremendously over the years!! I have been on steroids on and off for 4 yrs and now on full time for 2 yrs. I am on them for autoimmune disease related autonomic dysfunction (which is a fancy way of saying my immune system attacks my vegas nerve, which controls pretty much every automatic function in the body). The steroids were in HIGH dose for the first year and 1/2 and now I have been able to wean down to 7 mg of prednisone thanks to my rheumatologist and the drug 6-mp. 6-mp is a steroid-sparing drug (chemo, really) that helps the steroids fight the inflammation. It is a scary drug that has a whole host of potentially wicked side effects, including liver failure and pancreatitis. I have not had these YET...THANKFULLY! I get my blood checked every 2-3 months now just to make sure :)

I know how you must hate doctors now, and trust me, I was there too, but sometimes all it takes is finding the one that knows something just a little newer, different to get the ball rolling on finding a BETTER treatment plan! I was completely disabled last year thanks to one doctor's idea of how to treat my "asthma" flare up...HIGH doses of solu-medrol (an IV steroid)...I ended up in a wheelchair due to muscle myopathy, fainting after urination AND eating dinner, extreme hair loss (got a wig for that), and I looked like a heffalump (from Winnie the Pooh) :-P. Since starting the 6-mp (which was NOT an easy decision for me to make), I have lost quite a bit of the swelling/Cushing's, and am able to eat and urinate without falling down LOL...and I am walking EVERY DAY for over a mile on the treadmill and everywhere else I can :) It is not an easy road, but DO NOT GIVE UP!!! There are GOOD docs out there that are willing to give new treatments a try...

Please let me know if there is anything I can do to help, either on here OR privately!!!

Ivy

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Replies:

Re: New to this board; Decades of topical steroids and CS -- Susan, 09:36:12 01/06/07 Sat